Roller Coaster Ride

April is Sjogren’s Syndrome awareness month.  I’ve been thinking and praying about how much to involve myself with promoting awareness of Sjogren’s and generally for all invisible and little understood diseases.  I guess I’m writing this to provide a snapshot of some of what life is like with Sjogren’s Syndrome, autonomic nerve failure and other little understood maladies– for me anyway.  Maybe it will help or encourage someone out there who is also suffering.

Saturday 4/20/19: I worked a little harder than normal preparing my home and foods for hosting an Easter dinner for family and friends.  I did quite a bit of resting too, knowing that if I work too hard one day, I pay for it the next day in fatigue and increased illness.  I decided to let myself eat some favorite comfort food, pepperoni pizza, because I was working hard.  (Sigh.)

Sunday morning 4/21/19:  So I’m usually sickest in the mornings and feel unwell and have trouble getting my day started–this is pretty normal for me.  I awoke to my alarm for church feeling indescribably sick. More than normal.  FATIGUE. So weak. Dizzy. Legs felt like rubber bands and didn’t want to hold me up. So stiff, so much pain.  Bones, joints, muscles hurt.  Almost couldn’t walk due to stiffness.  It was Easter and I so wanted to be with my church family and witness two baptisms of new members.  NOT in God’s plan for me.  Hard to understand and trust that.  I forced myself up to take my morning medications, and drink my customary decaf.  The thought of showering or driving was insurmountable.  Back to bed.  This was all physical.  Thankfully I wasn’t also having another type of “sick spell” I frequently get, which I believe is a mast cell attack.  At least that wasn’t happening.  I was mentally and spiritually in good shape.  This was a Sjogren’s/Dysautonomia FLARE.  Was the pepperoni pizza the cause?  Good possibility it was, or at least a contributing factor, but no way to know for sure (frustrating).  Back to bed. Worshiped to music thanks to my I phone. Incredible worship with God–just Him and me.  Did a little bit of time on Facebook (boredom despite acutely sick and lack of focus on my worship) but my arms were so sore and so hard to move any muscles.  So exhausted, I felt like all the blood had been drained from my body.  Thanks to any who saw my posts and prayed for me.  Please see my Facebook post with the picture of a person telling Jesus about his “suffering”–that really resonated with me in my circumstances at Easter.  The picture came to me from a post in my Sjogren’s Christian support group on Facebook. and I have included the photo below.  I don’t know who to credit for the creation of this photo which is, I think, funny yet also quite serious in impact.  Contemplating the idea of my suffering being anywhere close to the suffering Christ did for me–it really helped me that morning.

Photo telling of suffering to Jesus Facebook posted

Sunday around 11:15 am.  Okay, I couldn’t sleep.  I’d worshiped quite a bit and wasn’t resting well.  My husband was wondering what on earth I was thinking being in bed when we were hosting family that day.  So I managed to force myself to shower, telling myself I could rest afterward.  One never understands just how much energy it takes to shower and shampoo one’s hair until one reaches this level of sickness with autoimmune disease (or other similar malady I guess), in my opinion.  But the hot water, a gift from God, really helped soothe my pain and stiffness.  Dressed–another miracle.  Blowing dry and styling hair–not gonna happen.  Make up?  A luxury only for the very well.  God by His grace helped me start feeling a lot better around noon after the shower.  I was able by grace and with much help from my wonderful husband and some of my guests to get through a good family day and dinner for Easter.  God always seems to provide the strength I need for the things HE really wants me to do.  It’s hard to press on, but I’m thankful when God helps me do so.

Monday morning, midnight.  Insomnia.  Need to unwind.  Why did I foolishly drink real coffee with my guests and family again?  That NEVER works for me.  I think my illnesses cause me to be extremely hypersensitive to caffeine. Finally slept around 2 to 6:30 am.  Awoke super high energy.  Manic mood.  Want to reach out to many people; want to do so many things.  It feels so amazing to have ENERGY even if it is false manic/caffeinated energy that usually follows my forcing myself to be up for family/an event when I am so down physically.  Hence I am writing this post.  Now I must guard myself from OVERDOING because I have some weird manic energy going on, otherwise I will crash and burn again.  My illnesses cause and include mood swings (physical brain stuff happening exacerbated by the foolish use of the DRUG caffeine) that create such a roller coaster ride for me.  Sometimes I wonder who I really am.  Am I the extremely tired, sick or depressed person I sometimes am?  Am I the manic, want to serve God so much, want to help everyone person like I’m feeling today?  Or is there a more balanced Beth in between?  My pastor recently taught me in his preaching that my identity is not in how I choose to identify myself, and not in my circumstances (or health)–but my identity is in Christ and in asking “God who are you?”, not “who am I?”  (This was taken from the example of Saul/Paul’s conversion in Acts and was from a first message on the book of Ephesians.)  I AM NOT MY ILLNESS.  My illnesses ARE HAPPENING TO ME.  God is allowing my illnesses for reasons I can’t understand.  My job is to continue to pray for healing, praying for GOD’S will for my life–not just what I want in the short-term, and to bear up and trust God, and yes even be thankful-IN EVERYTHING.  A very tall order on this roller coaster ride I’m on.  But God is able.  All believers in Christ have their own unique trials to bear, hand picked by God, to be used for our good.

Sjogren’s Syndrome, autoimmune diseases, autonomic nerve failure, dysautonomia, and so many, many illnesses are usually invisible to others and little understood.  Even on a good day I am tired and sick and in pain.  My long laundry list of maladies seems to be what God has chosen for me to bear.  So many people are suffering illnesses, past wounds, hurts, hard difficulties, etc. that we are unaware of.  Oh may God help me and all of us be more sensitive and caring to others at their point of need.  God make us discerning.  Show us the hurting around us.  And help us by Your grace to endure our hardships.  Sjogren’s Syndrome awareness is important.  No one knows what causes it or any autoimmune disease, and there is no cure.  There are no real medications/pharmaceuticals proven to help it.  The products required to help manage some of the terrible symptoms are super expensive and not covered by insurance because they are over the counter products (eye drops, mouth sprays, etc. etc. etc.)  It is way more than a dry eye and dry mouth disease.  And yes folks, it is a DISEASE!  It infuriates me that it is referred to as a SYNDROME.

I thank God for his gracious provisions for me in my illnesses.  Were it not for my husband’s support and financial provision I might be homeless.  I am disabled and unable to hold down a job.  I am unable to commit to any type of leadership or volunteer service that I so wish to do for God.  I do what little I can when I can and thank God for it.  Fellow Sjogren’s sufferers–please know that I understand, and I’m praying for you.




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